When you live with a serious disability, your own home becomes an obstacle course

The sport of parkour involves running, climbing, vaulting, jumping, rolling, and other physical movements—none of which I can possibly do, thanks to the spinal cord malformation I was born with. But the object of the activity, to get around urban and natural barriers of all kinds, is something I do out of necessity and, on my best days, with pleasure. My variation, disability parkour, is conducted with a wheelchair, but it is just as inventive when it comes to busting barriers—many of which are put up by able-bodied people, and accepted by other able-bodied people as the way things are.

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My wife first made the connection ­between parkour and disability one day as we started our morning routine, which involves her helping me wrestle on my clothes and then hooking straps to my ceiling lift, a device that hoists me from bed to wheelchair so I can get to work (or elsewhere) by way of my home elevator. Many of us with disabilities make it a point of pride to get to work on time—or earlier—even if we have to wake up well before you do.

Scenes like this play out daily across Canada in homes where disability resides. Jake, a member of my posse of personal support workers (PSWs), used to take his morning routine for granted: quick cup of coffee, clothes on, hair combed, and out the door in five to fifteen minutes. “Then I discovered it could take an hour or two to get some clients ready,” he says.

PSWs are one way of getting me around barriers: I need them to brush my teeth and hair, feed and wash me, help me with the bathroom, and complete all sorts of chores. They are my arms and legs. I am supposedly the brains of the operation, a role that is at the core of the philosophy of independent living—I make the ­decisions about what I need to do and accomplish on any given day.

Still, there are barriers I haven’t yet ­figured out how to get around, but they are minor compared to the ones that prevent far too many Canadians with disabilities (physical, intellectual, or otherwise) from more fully participating in society. Among the causes of such barriers are fear, ignorance, lack of money, hollow ­political promises, and failures of imagination.

In its most recent survey, the ­federal ­government found that there are 2.3 ­million Canadians between the ages of fifteen and sixty-four with disabilities, yet the ­overall labour-force participation rate for this group is in the woeful range of 50 ­percent, and sinks even lower for people with ­severe disabilities—an incredible waste of ­human potential.

I have been fortunate to find ­relatively well-paid work (for a journalist), and I have had (mostly) mindful bosses who understand my needs. In the late 1980s, the editor at Toronto Life arranged to install an early cellphone in my car. I would use it to call the receptionist, who would dispatch someone to haul the wheelchair out of my trunk. (This was back in my limp-­lurching period, when I needed the chair only for specific situations, before an abrupt ­deterioration in the state of my spinal cord brought increased limitation.)

Since then, “liberation technologies”—software, equipment, vehicles—have made it theoretically easier for disabled people to find work. I authored this column by talking into a microphone plugged into my laptop. Voice-recognition software then magically—or so it seems to me—causes my words to pop up on the screen, more often than not spelled correctly, pleasing the editor in me to no end. But too many of these technologies come with high prices that form even more barriers.

Fortunately, my voice software costs ­only around $100. My other liberation technologies, however, come with a hefty price tag: more than $30,000 for a home elevator; more than $1,700 for my (third) ceiling lift; roughly $3,500 for my (fifth) manual wheelchair; and another $650 for what I call “the world’s most expensive cushion” (my seventh or eighth), made up of layers of foam that prevent pressure sores, which, if left untreated, could lead to a deadly infection. A power wheelchair can go as high as $24,000, a number that amazes me, as I bought my first car, a second-hand 1964 Pontiac Parisienne, for $300.

An accessible van costs more than I can afford (the original price of the vehicle, plus around $12,000 to $30,000 for conversion), so I do the next best thing in a city where accessible public transit is fraught with problems: take accessible taxis that cost me $45 each way. Fortunately, my main driver, the big-hearted Abdul, takes some of the sting out of the high price by regularly bringing me my favourite ­coffee—an iced latte—when he picks me up.

Some territories and provinces offer government and charitable programs that can offset some costs, including the $15 to $25 an hour paid to a PSW, and I access many of these initiatives. Yet for many people with disabilities, there is a deep chasm between what they earn and the cost of products and services that would improve their lives.

This disparity was at the heart of a successful advocacy effort by the Thalidomide Victims Association of Canada, which was set up to wrest compensation from the federal government for the terrible deformities and abnormalities caused in hundreds of babies after their mothers took the so-called morning-sickness medication in the early 1960s.

In 2015, the remaining ­thalidomiders began at last to receive meaningful ­compensation—a $125,000 lump sum, followed by annual payments ranging from $25,000 to $100,000. Their average annual income before the settlement had been $14,000—hardly enough to live on, let alone access technologies that make life easier.

Throughout my boyhood and adolescence, I knew a lot of kids who had been disfigured as a result of thalidomide. I ­also knew a lot of kids with cerebral palsy, muscular dystrophy, polio, and acquired brain injuries. This was a time when the larger society had little idea about what to do with us other than put us in disability-specific institutions.

Many of us had other ideas.

What I have discovered over the course of my life is that disability parkour can be done in many places: in the courts, in the schools, in the hospitals—wherever there are barriers. But despite our progress, this country is still without national legislation that would guarantee against discrimination and enact strict standards for greater inclusiveness in all areas. It continues to surprise me that it has taken so long for Canada to even consider enacting our answer to the Americans with Disabilities Act (ADA), which, despite its flaws, was a bold attempt to create a barrier-­free United States.

Today, as I write (well, voice), it has been nearly twenty-seven years since the passage of the ADA. Consultations across Canada seeking public input for the development of new accessibility legislation have recently wrapped up.

Ultimately, no one piece of legislation can destroy all the barriers. The world of disability is full of complexities, brimming with a variety of specific needs, and overrun, sometimes, with the tyranny of good intentions. But if the bill that eventually does come forward gets the basics right—making it easier to find an accessible home, to get an education in a supportive environment, to get a job, to access public transportation, to get financial help (if needed) with PSWs and liberation technologies—then it will greatly increase the chances that Canadians with disabilities will no longer be forcibly shut out of large swaths of everyday life.

It all sounds so hopeful. But it is important to remember that any proposed legislation will still be a long way from ­actually being introduced, let alone made law. We don’t yet know any details. We don’t yet know whether there will be ­enforcement mechanisms with teeth. There is ­definitely room for optimism now that ­national ­accessibility legislation is actively ­being considered. But if it falls ­significantly short of what Canadians with disabilities need, well, we have all learned a few things about getting around barriers—both old and new.

Stephen Trumper is a writer and editor who teaches at Ryerson University. He is a columnist for Abilities magazine and has worked for the Globe and Mail, Toronto Life, Harrowsmith, and Financial Post magazine.

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Stephen Trumper is a writer and editor who teaches at Ryerson University. He is a columnist for Abilities magazine and has worked for the Globe and Mail, Toronto Life, Harrowsmith, and Financial Post magazine.